Any advice on sleep. I take zopiclone 3.75 at 22.00 bed at 22.30 then awake & loo visits about 01.30, 01.45 (take prednisolone 30mg) then it's 03.30 & 05.40 when I get showed & dressed. Exhausted & doesn't help me cope when the 2pm pain always comes.Am new to this (Nov 2016) & really getting depressed at the thought of 2years++ of this. A keen golfer & walker has gone. Help please.

23 Replies

  • You could try taking the Zopiclone earlier. I found that if I took it any later than 8pm it just didn't work for me. Giving it the extra time helped a lot.

  • Thanks will try tonight

  • Do you have PMR or GCA? Has the 30mg pred made any significant difference?

  • Both started on prednisone 30mg on 23/11/16 felt great after 4 days then stupid doc said decrease to 20mg after 10 days get down to 15mg by7 th of Dec. Ugh only got to 5 days of 20mg was in agony.So back to square one 30mg Pain subsiding but insomnia worse.

  • If you have a GCA diagnosis then 30mg is a very low starting dose - and to reduce from it at all after 4 days shows your doctor has no idea what he is dealing with. You need someone who does if you really have GCA.

    There is a suggested approach to managing GCA here that is far more in line with usual practice:

    They start at 60mg - assuming visual risk I assume - but a starting dose of 40mg for a month is much more usual.

    But to start you on 30mg and reduce to 15mg within 2 weeks is asking for trouble. Yes, you will have side effects at the high doses but they are preferable to the ultimate side effect of GCA which is irreversible visual loss.

    And can I also say - if it is GCA you have then you have a serious illness and rest is essential even if you don't sleep. You have been referred to a rheumatologist I assume? If a rheumy told you that reduction - you need a new one.

  • Yes doc did ? GCA hence 30mg prednisone instead of 15mg for just the pmr but why did he not go to 60mg. Alsohad GCA 20 year ago.......alost forgot just remember few weeks prednisone then no problems. ....until now.No havenot been rereferred to Rheumatologist but when I see (murder!)My doc on mMonday (out of UK until then) I want a private consultation asap as I have been totally mismanaged.I llive in Suffolk anyone know Rheumatologist at Norfolk Norwich Hospital or James Page? ???

  • The guy at James Paget sounds good - someone asked recently after being poorly managed somewhere else (N&N I think), someone recommended James Paget which was really handy for her. She's had her first appointment and was very impressed by their attitude and listening to her I think. Dr Thomas is the clinical lead and does private work too:

    If GCA is suspected then it should be treated as a medical emergency, just like a stroke or heart attack - immediate emergency referral to a rheumatologist. Some hospitals do fast-track appointments for GCA. It is possible your GP can get you an emergency appointment at JP if he phones them - save you some pennies!

    Don't murder him - it's messy - educate him!

  • Thank you so much I fly home on Saturday so hopefully I can get to JPaget on Monday. Feeling more positive now that something might be done.This forum is amazing thanks to you all.

  • I just give in to the insomnia and listen to the radio. I do have short naps during the day and evening, particularly when watching TV, when I catch up on sleep.

  • I take 30mg codeine and that had worked for me .

  • My GP prescribed me amytriptiline. At low doses, I take 10mg but you can take 20mg it helps you sleep and also helps with the pain. It's non addictive and you wake refreshed. I have found it very helpful.

  • If amytriptiline works for your pain - are they sure about the PMR diagnosis? It doesn't usually do owt for PMR - like most ordinary pain killers.

  • I think with the sedative effect it just makes me less aware of it which in turn helps me sleep

  • I am also on Amitriptyline (35mgs)to help me sleep, prescribed by Prof. Dasgupta. When I tried to come off it a couple of years ago, it felt like I got a proper flare, so I asked the Rheumy if this meant I had something else wrong with me as it shouldn't help with the PMR pain. He said some PMR patients are actually helped by the Amitriptyline too. Who knows how much worse I would be without it- that's a scary thought as I am bad enough already!!

  • It all adds to my suspicion that i have held for a long time that PMR is really NOT just PMR - if you see what I mean.

  • Mine certainly doesn't behave itself the way it should!!

  • Zopiclone is I think a sleeping pill. If you've been taking it for some time now it might have become less effective. My sleep pattern is poor, but that goes with the GCA territory. I do not take any sleeping medication, but tend to take a 30 minute nap mid afternoon. That gets me through the rest of the day.

    I too was a golfer and walker, but GCA reduces muscle power, so they are on the back burner. Exercise would help with sleep, so I must try harder!

  • A top PMR research rheumy commented to me yesterday how many golfing PMR patients she has!

  • Is it the golf that causes so many aches and pains, leading to PMR, or is it simply that golf causes sleepless nights? !!

  • No idea - I've never played...

  • I believe it was Mark Twain who said golf is a good walk spoiled.

  • It was!

  • Couldn't have put it better myself!

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